Speaking the same language

Advocate Michael Louella talks about ‘50 shades of cure’

By Josh TagerBy Josh Tager

An HIV cure is a real possibility, but not a given. One way to hasten effective research is to make certain cure researchers and the community speak the same language. What’s the difference if one researcher says “cure” and another says “remission,” and what do various community members hear?

The application of technical jargon versus plain language (depending on context) carries staggering consequences, both positive and negative. Take the word “remission.” That word alone could make the difference between a person consenting or declining to participate in a clinical trial; it can determine whether a person living with HIV decides to try a new treatment; it can have community-wide implications in subverting HIV stigma.

Effective cure-oriented research mandates that scientists—especially those who don’t live with HIV—listen to those who do with perfect sincerity and seriousness. In turn, the community must ask questions, and ask more still so they can serve as effective advocates and get the results they want: a meaningful cure.

Michael Louella, a 50-year-old educator and activist, is spurring the conversations that need to be had. He currently serves as both the Outreach Coordinator for the Seattle AIDS Clinical Trials Unit as well as the project coordinator for one of six NIH-funded public/private HIV cure science collaborations. A close witness to the factors that lead some communities to distrust science or feel disengaged from it, he’s applied his natural facility for poetry and storytelling to examine how people with HIV respond to the complex terminology of cure science, and most importantly, to help medical scientists and the community speak the same language.

As someone who’s been engaged in the cure social sciences since the beginning, what are some of the biggest changes you’ve seen in how different groups talk about an HIV cure, in particular, words like “cure” or “remission”?

People working in the cure social sciences have become cautious, more precise in the ways we describe the research effort. It’s a tightrope we all must learn to walk. Keeping a balance between hope and current reality.

You want people to hear the good news, you want them to get informed, get inspired, and get involved with the cure effort. But if you’re not careful, in a heady rush of excitement you may find yourself beginning to sound like a preacher preaching a gospel of cure.

That’s when you begin to use qualifiers, or different words altogether. The danger here is that people notice the shift in tone, and often suddenly are plunged into despair. You want people to understand fully the scientific challenges facing us. But to be able to do this effectively, while not squashing all hope.

Do you think when medical scientists talk about cure they mean the same thing as people living with HIV or affected communities?

No. I think when scientists talk, they implicitly understand that there are fifty shades of cure. Because they talk science and think science all the time, they better understand how both clinical research and the human body work, and better appreciate the limits to each. They know science is baby steps, and that progress toward a cure will be lots and lots of baby steps. They know this and accept this.

Non-scientists don’t know this. Not understanding the processes and methods of a scientist allows them to think of science as more akin to magic.

What are the consequences of this?

The real disconnect comes from serostatus and the stigma, rejection, and discrimination people confront in varying degrees every day and, many assume, for the rest of their lives. To live with HIV is far different than to work in HIV. Scientists may feel empathy, but I bet if they lived with HIV in their bodies, they might talk about and use the c-word differently.

When people with HIV hear “functional cure” or “remission,” I can sometimes sense an immediate distrust rising, a silent accusation in the way they start to look at me that says, “Wait a sec, your eyes done slipped from the prize.” They don’t want us to rest at remission or functional cure. When we talk about remissions, they think we’ve given up on cure. And that’s unacceptable to them. To them, functional cure is like sitting with a time bomb that could go off at any moment, hurting themselves of course, but what’s most dreaded is the idea of transmitting the virus and hurting someone they love.

Alright, so what are the benefits of using language that is consistent with how most people living with HIV and their communities think about that language?

Speaking the same language opens up the potential to collaborate and grounds relationships to endure in the face of challenges and setbacks.

What about the opposite? What are the consequences if language isn’t consistent?

I often think back to 2014 when we were lucky to have Dr. Robert Siliciano—who was visiting Seattle to present a science talk—agree to participate in a community Q&A about HIV cure research. The defeatHIV CAB partnered with BABES Network-YWCA to bring 70 of our community members together to listen and to ask questions about the science. Dr. Siliciano fielded a wide range of questions from our audience with grace, and answered them plainly and clearly.

That night I think Seattle finally grasped that sometimes when scientists say cure they really mean remission—and by remission what people hear, is temporary.

Our emcee, a local journalist named Nina Shapiro, captured this startling revelation of the night in a blog post the next day in Seattle Weekly: “HIV ‘Cure’ Likely to Be Temporary, Says Leading Scientist Robert Siliciano.”

How does it play out when people react that way?

There will be no people to participate in studies and help scientists determine a curative strategy that works for everyone. There will be distrust. Conspiracy theories will be seen as truth. Disparities will grow. Despair will rule our hearts, and dreams will be deferred.

Remember, no one longs to listen to a litany of data from a scientist. What we really want is what all humans beings love above all else, which is a good story told by a good storyteller. HIV cure research has some great stories that await to be told. Just be careful with the things you say and the way you tell it, because we are all listening—especially people living with HIV.